A Blog For Those Getting Used To Life With A Stoma

Stoma surgery? IBD? Low Self Esteem? You’re not alone.

Hi! My names Hattie Gladwell and this blog represents my life with a stoma, and how I learned to live with an Ileostomy Bag. I underwent Ileostomy Surgery following a diagnosis of Ulcerative Colitis in February 2015, and since have spent my time helping myself and hopefully others regain confidence after Ostomy Surgery, whilst writing for SecuriCare Medical.

I have always felt that confidence is a great thing to have; and I understand that a stoma bag can be hard to deal with. I’m still dealing with it, but my aim is to gain my confidence back whilst doing so!

Here I will be posting my experiences and anything I can to help raise awareness for diseases like Ulcerative Colitis. Feel free to submit your own thoughts, stories and photos!

Here’s my story…

On Monday 26th January, when I was 19 years old, I was admitted to hospital with suspected appendicitis. My appendix was taken out in an emergency operation the following day, but it turned out my appendix wasn’t the problem. I had been gravely ill the previous week and this operation had not solved anything, it had merely given me more pain. With severe abdominal cramps and diarrhea still, I was given two colonoscopy’s. The doctors were unable to get into my colon because of the amount of waste sitting in there. They left me for 5 more days on high pain killers, I was pretty out of it on morphine most of the time but it did not stop the screams of pain and constant rushes to the toilet. It turns out the registrar had misplaced some information from my examinations and not informed the doctor of the seriousness of my case, as once aware, the doctor warned my parents of another operation, judging on how I was coping the next day.

Saturday came and nothing had changed except the extortionate amount they had upped my pain relief. I remember my mum telling them “you wouldn’t keep an animal like this, you’d put it down!”. My best friend was visiting as well as my parents when something didn’t feel right. Something alarmed me and I felt a burst in my stomach. “Did you hear that? Something popped! Did you hear? Mum! Something popped inside me! Help!”. My mum screamed for a doctor but the nurse just wanted to up my pain relief again. My mum wasn’t having any of it! “You get me a doctor NOW or I get one myself”. My friend ran out to the front desk for a doctor, and then called my boyfriend.

All I remember from that moment on is a rush of people. A blur. A doctor shoving a piece of paper in my face for me to sign for an operation and my mum squeezing my hand. I didn’t understand what was going on and I was terrified. My boyfriend came and held my other hand, and all I could see in his eyes was fear. My mum explained to me that I was going to be going into theater. Confused, I cried in fear. It was at that point that I was told if I did not have this operation, I would die. It was then I saw the tears in my boyfriends eyes. The heartbreak. And it’s funny, because at that point, I stopped thinking about myself. The only thing I focused on was making sure I told everyone I loved them. Everybody in that room with me needed to know I loved them.The last thing I’m aware of is waking up in pain. Absolute agony. I couldn’t breathe, I couldn’t move, nothing. I felt like a robot. I felt like the life had been sucked out of me. My mum tells me I cried out “Help… Me… Mum” all night long. I don’t know.

The few days were silence. I didn’t want to talk to anyone about what had happened. I didn’t want to know. I just wanted to forget. Then the nurse came round to check on me. A different nurse. And that’s when I had to look. I peered down at my stomach in fear, and saw my worst nightmare. An ileostomy bag, followed by a large scar down my stomach. I pulled my head up as quickly as I could and sobbed, and sobbed.. and sobbed. I couldn’t deal with it. I felt disgusting. I didn’t understand. Why me?

For those of you that don’t know what an ileostomy bag is.. it’s a bag for your stool. During my surgery, I had had my colon (large intestine/large bowel) removed from my body. I had been diagnosed with ulcerative colitis. It had gotten so bad that if they had left it a little longer, it probably would’ve ruptured.. and I wouldn’t be here. I am now left with just my smaller bowel, which is sewn through to the outside of my stomach, the end is called a stoma. As you can imagine, it broke my heart. It scared me. It made me feel abnormal. I can no longer go to the toilet like a normal person, I can’t eat like a normal person, what’s my boyfriend going to think of me? How will I ever look at my body with confidence again?

Over a week since the operation, they’ve finally let me out and I am starting my two month recovery period. I’m in a lot of pain and I still cannot bring myself to look at the stoma beneath the bag. The disease has caused me to lose over a stone in weight and I am struggling to put it back on as I no longer have a proper digestive system I’ve moved back home and my mum is currently my carer. She’s helping me come to terms with it all. I’ve joined some websites to talk to others in the same situation and I’m going to deal with it, I have to. I have to be grateful, this saved my life. I need to be strong and help myself. This is not going to change me. This is not going to defeat me, and hopefully, I will be able to look at myself and feel happiness again. I’ll be able to appreciate myself as much as I should’ve beforehand. I’ll be me.

Hi there! Just want to tell you that your blog is going viral in Brazil. Let me say that you are AMAZING and in a way helped me to keep moving away from my own problems. Keep the good vibe, woman, u r gorgeous!

Hattie, I admire your courage. You’re helping lots of people in similar situations by sharing your story.
I understand what you’re going through. My stepfather has Crohn’s disease for around 30 years. He lives a normal life and is still working, thanks to the treatment he received.

I was diagnosed with Ulcerative Colitis at 13, with the dr adjusting the diagnosis to crohns when I presented with external infections.
It’s truly inspiring to see this. And you should be so very proud of yourself. We as IBD sufferers are lucky to see strong women such as yourself stand up and say hey. This is me. Accept it.

Hello Hattie. Since november 2011 I carry a urostoma (after a diagnose of bladder cancer) . I can only emphasize that carrying a stoma is indeed not the end of the world. In the beginning the stoma looks a little weird, but I got used to it very soon. I look at it as if my inside plumbing has been rearranged, what in fact is the matter. Only a short period after my operation I took up my job as senior lab technician in an oil refinery, every day going to work by bike. Since then I continued doing fitness, biking and even am a handbal goalie. Also I try to help other (in my case urostoma-) patients. I make regular visits to the hospitals in the neighborhood to go and talk to people who have undergone (or will undergo) the same operation. This really helps people look at it in a more positive way. I hope you will soon find your confidence again, and totally accept (I hope you don’t mind my saying so) your ‘little inconvenience’.

Hii Hattie
I have a son,two years old now,and when he was only four and half months old he had to have a surgeryy that saved his life and got colostoma either,and we had to deal with it for the next eight months,lucky for him he got better and they removed it with another surgery when he was one,so I know how hard it is for you and I wish you that positive thinking and that strenth forever,you are beautiful and let noone to tell you otherwise

you’ve been so so lucky to jump off from the wheelbarrows of death. (like i did in july 2013 and october 2014)
i wish you now ALL the positiv energy, happyness, joy, friendlyness and success you can get from your family, friends, partner, neighbors, and known by all the other people around you.
have a great and healthy future.
regards from a (old >50) like-minded person from switzerland

I have UC diagnosed sence 2006 and I still have my bowels, until now is controled with the medication but we never know and Im really scare just to think that something like happened to you can happen to me! But is when I read stories like yours that I believe that is not so a big deal and we can continue with our life! Thank you for sharing and I love your blog!

Hattie u r one amazing and truly beautiful young lady, my doctor told me too read about how u r coping with a stoma bag as in June this year I have too have a operation too have my bowel removed and be given a stoma bag as I have been fighting bowel cancer for 2 yrs, I have 2 grown up kids who also r very worried but I shall get them too read your story and hopefully give them a bit more info on wat the stoma bag is and how it shunt change your life Thanku so much for your story xxx

Dear Hattie,
I’ve lived with a colostomy bag since cancer surgery March 2006. I wish I’d been as brave as you, showing the world how beautiful you are despite what has happened. I wish that now, at 38, I could do it. Yet I can’t. I can’t begin to describe how awful my experience has been (probably due to my insecurity over my bag), or how I wish you’d been around then. Thank you for doing this for all the young people, so they can see that life doesn’t end with a bag.
XOXO
E.

Hi. Thanks for your blog. It’s fantastic. My wife has an ileostomy. Sometimes she hates it but she realizes it saved her life. She doesn’t let her stop doing anything she wants to do. She’s had it for fifteen years.
Your blog is inspirational!
xx

Your blog has been such a help to me! I’ve just had my ileostomy surgery last week and reading about someone else going through the same thing has really helped me start coming to terms and being less afraid and more confident about having a bag.

Dear Hattie,
You are such an inspiration – I have so much admiration for you. You may not know it, but by writing this blog you are changing lives. You have changed mine. I have been ashamed, humiliated, depressed and so hopeless, but you have opened up the conversation about bowel disease and made me realise that there is absolutely no reason for me to be ashamed!
I honestly cannot thank you enough. You are a hero in my eyes!
Brittany

Dear Hattie! I am suffering from Crohn disease since childhood. I Was operated juste like you At the age of 19 years and Wake up with ileostomy.
Afterwards i suffered a total of 11 operations cut on The same length as you.
Soon 47 years and I ´m starting to love me develop myself and the beach…….. I prevent nothing to do with my stoma, on the contrary! I think you ´re great to take pictures of you and it’s a more of your generation. Wonderful woman and congratulations to you and Long Life !! Xxx
Josee From Quebec City, Canada

Hattie, Be brave. Crosses are not heavier than our shoulders are able to support. Going through it will make you stronger and maybe you are really stronger than you have realized till now – you can really have about a normal life, and help to fight prejudice. Please be brave and LIVE!!!!!!

I felt inspired to write on here after reading your story in the DM. I was recently diagnosed with UC after being admitted to hospital in March after weeks/months of being in agonising pain, constant toilet dashes while at work and at home, exhausting fatigue, and with the doctors not taking my symptoms seriously, I took myself to A&E where finally someone took me seriously and actually told me how ill I really was and if I had left it any later, I would be looking at surgery. After a week long stay, with IV steroids and a couple of blood transfusions to aid my recovery, along with a daily heap of medication for the future including steroids which I’m still taking, I’m finally on the mend. I hope surgery/stoma isn’t a route I have to take one day, but if it is and helps me, I know I’ll find inspiration in your story and hopefully I can adopt your positive attitude too. Take care xx

Hi Hattie
I’m proud of you I had the same situation 14 year ago an emergency op to remove my large intestine I have had a few ops since and now have an ileo anal pouch life goes on we are still alive enjoy your life to the full X

At first, I want to apologize for my English because I’m a French Woman ^^. I’m 25 and it’s been 6 years i’ve had Crohn’s disease. I don’t have an Ileostomy Bag so I can’t barely imagine what you can live every day. Our diseases are really hard to live, so I wanted to give you all my encouragements.
Hope everything will be fine for you.

My daughter has UC, she was diagnosed in 2001 and is 27 years old now ..thankfully meds have kept her in remission more than she has been in a flare, but when she is it can be pretty bad- it’s good to know there are positive people and positive stories out there such as yours.. You keep the faith and stay strong and you will be just fine! looking forward to more of your blogs 🙂

Hi Hattie,
It gets better,
Paul aged 68, 10 years later.
The best 10 years out of the last 40.
I lived with colitis pain for 20 years and finally it led to a perforation, six days
Of terminal prognosis and an ileostomy.
I had the same reaction upon waking up and wanted to die.
The number one advice I give to you all that no one mentions. Get lots of Potassium and concentrate seriously on rigorous hydration. These are what one continually needs to seriously replenish to stay fit.
Drink constantly and recharge with orange juice or equivalent.
This is the #1 downside and the least mentioned.
If you want more suggestions let me know.
The good news is that your digestive tract will work better than ever and you will now have a long and happy life.
Smile, paul

Thank you! I’ve been feeling rough recently and I seem to forget to stay hydrated! I’d love some more suggestions if you have any, I’m struggling a little at the moment. Please feel free to give me a message on facebook, I’m able to reply a lot faster there! xx

I was diagnosed with Colitus at the age of 30 and suffered for 13 years then the surgeon said it was time to remove my large Bowel and put the Bag on, it was my 43rd birthday and i decided to have it all removed and the Bag put on, wow what a difference did that make I am almost 60 now and I wish i had it done when I was 1st diagnosed, I eat and Drink anything I feel like, no Medication at all, Lifes great compared to before the Bag, the quarter-zone and all the other Medication that was shoved into me was a waste of time and made me feel like crap there’s only one way to feel good with Colitus is to have the Bowel removed,,,,I suffered for 13 years to keep the Drug companies smiling then it was my turn 🙂
PS: I have never stopped working and I am a Truck Driver and do Handyman work, Landscaping, Fencing and love it,,,,

Wow, what an inspiration! I think your comment could be extremely helpful to those currently debating the decision. It’s so great that you haven’t let it effect your career – that’s one thing I was really worried about! Thanks so so much for this comment xx

Hello Hattie,
Congratulations on your blog and recent sponsorship from CliniMed UK Ltd. I had the great pleasure of meeting the CliniMed team last year. Ms Sara Brechon is indeed a lady. I too have an ostomy and struggle from day to day but keep the chin up.
Congrats again for a great blog.
Finbarr.

Hi Hattie
I suffered with ulcerative colitis for 10yrs controlled by high doses of prednisolone eventually I was given my iliostomy at the aged of 30 it was the best desicion I ever made it transformed my life, after repeated hernias I am now on my 4th re site, I had mesh put in 4 yrs ago which got infected and was dressed daily for 4yrs until I recently (2 weeks) had it removed and now fingers crossed infection clear.
People need to be aware of what this horrible disease does and still doing to people good for you keep it up xxxx

Hi I had a iliostomy when I was 22 I was a single mum of a 1 year old I missed most of his first year as I was in and out of hospital, lucky I had good parents to help me. That was 32 years ago I have since met the love of my life who accepted me as I was ( it took me 5 month to tell him about my oliostomy), I have another son who is now 26. I admit it is hard when all your friends are going on holiday and wearing clothes that you no you can’t wear. But I would rather be like this than the alternate which is to not be here at all. So be brave you will get through the bad times and the good times will outweigh them. You can contact me at anytime if you need any advice stay strong xx

Hi Hattie
Read your post…and understand your concerns being young ….the devastation you are feeling at the moment…but the pain will disappear…the scar will eventually fade and will hardly be noticeable ….but the Stoma stays….let me reassure you….over time you will sometimes even forget that it’s there,your body quickly adapts leaving you carry on with all things you have always done.
There is very little if anything you won’t be able do …to the extent that you will probably be able to do things which you never did before.Once your body adjusts.Initially it’s very daunting to have to go through all the rigmarole with the pouch,you HAVE to ensure it (Stoma) doesn’t control your life, you control IT.!!!
I had a cancerous tumour removed after it had pierced my bowel..was very lucky to survive…followed by 10 weeks recuperation…..only to be told some months later the cancer had returned…this was followed by the same operation you had…….and then 12 months chemo….not nice at all,so yes I have crossed the same bridge.
Feel assured it won’t defeat you,and you will be able to look at yourself,and as far as the intimate side of your life is concerned again don’t worry …be open and honest with any potential partner,explain what it is,to the extent show them exactly what dealing with,rather than the shock syndrome you’ll be fine (Guarenteed) Again I know because been there and done it.
I wear shorts,trunks,low line jeans..it’s not a problem,go swimming ,wild weekends drinking ,it will not stop you enjoying your life…however it WILL….if you let it.
I actually wear Novelty pouch covers now, and when in company of family or friends I become topic of conversation regarding which cover I’m wearing ..on beach,swimming etc,you know all the NORMAL things you expect to do..
Remember nobody actually knows you have got pouch on..but hey who gives a s**t..if you’ll pardon the pun!!! And always remember you will always have a little advantage over them…you won’t have to rush off to the Loo….think about that one.
Anyway that’s enough of my preaching…go out and enjoy the rest of your life…and may it be a long and happy one.
Good luck.
Paul

I have had Crohns since I was 19 – I am now 53. After many many resections of my large bowel, I finally had the last part of my large bowel taken out when I was 32. I still hate it. I detest it. I can’t wear normal fashionable clothes. I don’t ever sleep through the night. The sight of it makes me sick. I am never naked in front of my husband (or anyone for that matter) Yes, I am grateful to be alive – if it wasn’t for the ileostomy, I would be dead. However, I still hate it. I would have it reversed in a heartbeat if it were possible.

Why don’t you have an “pouch” that whould replace your stoma? Your so young and this should be possible. And if there was only an part removed than there is also a possibilty to fix it just like normal an dyou don’t need an stoma.
Have they told yoy of thes opporunities??? Otherwise ask for it?
Beacause thats what they do here in the Netherlands.

I had the same surgery in January this year to. I was also extremely ill and it was a do or die type of thing. Luckily I was able to get mine out with keyhole so recovery was a bit quicker.

How are you finding your abdominal muscles? do you have any problems sitting or standing up straight? Mine have taken ages to get better but they have improved.

I also had (and kind of still do) have a bit of a paradoxical opinion of my stoma. On one hand it saved my life and has been very beneficial. On the other, I still can find it disheartening to have to deal with (changes, care, maintenance) and to be honest, still kind of freaks me out a bit to know that I have no colon o.O

I’ve found those closest to me to be the most supportive and important, like everyone really does in these kind of situations. It’s been tough but the battle’s not over yet, j-pouch consultations pending, but you, like me, have come through round one.

Hi Hattie
Yours is the first blog I’ve read about stoma bags,a great inspiration to an oldie like me.
I’ve had diverticulitis disease most of my life and dealt with it by looking after my diet. However, I have been feeling unwell for most of the year and have had two episodes of a blockage, helped by antibiotics.

I am now six weeks post operation. I was rushed into A/E and was admitted to a ward, soon after my large bowel ruptured. After an eight hour operation my family were told it was touch and go whether I survived. I was left with colonoscopy. After four days this decided to go back into my body, a race back to theatre, a five hour operation to save my life and my family saying their goodbyes has left with a stoma. I am now home sleeping in my own bed (bliss) and learning to come to terms with it all. I think this isn’t going to be easy and won’t go away so I have to get on with it. Hope this helps someone out there. Dottie

Hai
As i’m lying here in hospital after i had a colonstoma surgery last week i came across your blog.
I feel everything you describe, i feel disgusted about myself, mutilated, no confidence etc
Your story gives me hope that things will work out fine once i accept what has happened. I thank you for that and admire your courage

Hi!
I’m 33 and I also have an ileostomy bag due to colon cancer, since october 2015. In addition to this, I have a high debt ileostomy which is even more limiting.
I’m hoping this will be temporary but “temporary” could be several months or even years….
I love reading our blog for some inspiration and encouragement, so thank you. Thank you so much for sharing your thoughts and fears with me, with us.
stay strong
Joana